Hi folks. Just a personal intro.

[scott001]

Hi there.

What a wonderful board. Thank you to the team who developed it and to the people who sponsor it.

Just taking the time to introduce myself. I am a 41 year old male who has been fit and healthy all my life. In fact, until recently, I had been a police officer here in Sydney, so I considered myself quite fit.

That all changed about 10 weeks ago. I found myself in the ER and Intensive Care unit of my local hospital after suffering a number of seizures. My wife tells me the first one happened around 6am whilst she was getting ready for work. As I start work later than her, I was still in bed.

She was in the kitchen having breakfast when she heard me moaning so she rushed in to the bedroom to find me with the top half of my body on the side table and the bottom half on the bed. (This has caused me to crack 5 vertebrae.) I was convulsing and all the usual stuff. My wife phoned an ambulance and I was rushed to the hospital after suffering a 2nd seizure in the ambulance. I then had a further 2 seizures that day whilst in ER. I have since been told that had I suffered 1 more seizure, they would have placed me in an induced coma to give my brain time to rest.

Anyway, I was in hospital for a week and had all the tests and scans. All results were fine. Nothing found to be wrong. I have since been placed on a regime of 1500mg Keppra twice per day, 200mg Tegretol twice per day, along with high doses of vitamin B1, Folic Acid, and Multivitamins. (As an aside, I would love to hear feedback regarding this dosage of medication and how it compares to other peoples dosage).

I had my first appt with my Neuro last week and he has reduced my Keppra dose to 1000mg twice per day.

This is the part where the massive guilt comes in to play, especially on a forum such as this where people are here because of things out of their control. My seizures were caused by abuse of the sleeping tab Stilnox. (Ambien in most parts of the world.)

I took them for too long and too often. I was taking them during the day as an anti-anxiety med, then more at night to sleep. After one 24 hour period without any, this is what happened. To top it off, our daughter was in bed with me when it happened. I will never rid myself of the guilt associated with what I caused to happen in front of my daughter. My wife and I had tried for over 10 years to have a child before being told that we were unable to. We then spent another 4 years completing the adoption process before finally adopting a beautiful little girl from China.

I then go and have a 'self induced' and 'stupidity induced' seizure in bed with her which caused her no end of fear. The 4 Neuro's who treated me all said seperately, that had my wife not have found me after my first seizure, I would not have survived the following 3.

I have not gone back to any medication besides my prescription meds, as I have such a hatred for them, for what I allowed them to do to me. In time, I feel I can get over my extreme stupidity and my failure to be a responsible husband, but I do feel that I shall never accept or get over what I have done to, and in front of, my daughter.

Sorry for the long intro, but I actually feel a little better for typing this and getting it off my chest. I am sure some of you will judge my character as a result of my pathetic behaviour. I am not after sympathy by any means. I am simply here to gain knowledge about seizures and Epilepsy and the medications used to treat them.

Nice to finally meet you all.

Scott.

 

[huskymom]

Hi Scott and welcome :hello:

I am soooo sorry to hear what you have been through. I am glad that you found us and have been able to get some things off of your chest. I can only imagine how you feel. My sons have never really seen my seizures as the majority of them happen while I am asleep. I know your daughter is frightened now...her daddy was in pain. As you recover, she will see that you are getting along and you will be able to explain to her in a way she understands, what happened. Please try to let that guilt go. A lot of us feel guilt over our illness. I know you feel even more because of your medication over use. Did your doctor say that is what caused your seizures? I too brought on my E. I am anorexic and was down to 86 pounds when I was 45. I had no idea that brain cells were dying off and my body was eating its self. But that is all water under the bridge. You need to tell yourself that now that you know what was happening to you while taking that drug, you will not do it again. There really isn't anything else that you can do. Forgive yourself for your daughter and your wife.

 

[Nakamova]

Hi Scott, welcome to CWE!

First off, don't worry about members judging you, and certainly don't judge yourself so harshly. What happened to you was an accident -- you didn't plan to have seizures, and you didn't plan to have them front of your daughter,

Secondly, many members have had seizures in front of their kids. It happens. It's not pleasant or ideal of course, but please keep in mind that kids are amazingly resilient and accepting (especially compared to many adults). Your daughter saw you in pain, and that's hard for you. If she's young enough she may not even remember what happened. If she's old enough to remember and be anxious for you, reassure and educate her -- it might take time, but you'd be surprised at what she can understand, and at the empathy she can show.

Now as to the meds, I have a few questions: Ordinarily seizure treatment starts out as monotherapy. Did the docs start you on Tegretol or Keppra first, and then add the other med because your seizures weren't controlled? Do you have seizure control now? Any side effects? Did you have an EEG and MRI done in the ER? Do your docs think that you will eventually be able to come off medication?

Ordinarily B Vitamins are prescribed together in a B-complex, as they work together. Sometimes extra B6 is added to help with Keppra-related moodiness, and extra B12 if there are blood-related side-effects. But it strikes me as unusual that you would be given the B1 (Thiamine) all alone. Did a test show a deficiency? If so, I suspect that it's related to your sleep issues and the Stilnox. Will you be tested again at a later date to see if the deficiency is still present?

I realize that this must be a stressful time for you, to say the least. I'm glad you found us, CWE is a great place for advice, support and understanding.

Best,
Nakamova

 

[Flex Herns]

Scott, welcome to CWE. As Nakamova said, don't worry what anyone thinks. I didn't bring my epilepsy on myself by using medication, but by being overly anxious about meaningless things. What I thought were anxiety attacks ended up being epileptic seizures.

About self-induced seizures, I've done it...being an idiot. I'm not allowed to consume caffeine or high amounts of sodium. A few times I've made the dumb mistake of consuming chocolate, whether it's cookies or brownies, resulting in petit or grand mal seizures (staring into the distance or falling to the floor and having convulsions). My wife gets mad at me, with good reason, because I know I'm not supposed to consume items like that.

About medication doses, I'm currently taking 750mg Keppra twice a day, but when I was first diagnosed I took up to 1500mg of Dilantin three times a day. When the neurologist finds a prescription medication that can properly control your epilepsy, they may shift through different medications. I've gone from Dilantin to Topamax to Tegretol to Keppra. So far, Keppra's been the best at controlling it.

About your work, I'm not sure how stressful being a police officer is, but if the stress of working the streets is high, it may restrict you to being behind the desk, in my opinion.

Glad you're on CWE and hope to hear more from you.

 

[lovemyladybug]

hey scott ! welcome to CWE ! your definitely in the right place .... im sorry this is happening to you , it's no fun ! Please dont be so hard on yourself , you didnt ask for this and you didnt know it was going to happen & your wife and daughter know this , im sure even though it was scary for your daughter she only wants you to get better , so do what you have to do to shed that guilt , and concentrate on getting yourself better ! and keep us informed

 

[scott001]

Wow, thanks for the replies guys. Also, thanks for the kind words. I appreciate it. You sound truly wonderful people.

In reply to some of the issues raised, Huskymom, yes the Dr's have stated that the seizures were caused by the abuse of the Ambien. I suppose that after 10 years, my brain decided it had had enough of being abused and rebelled. I am sorry to hear of your anorexia, however am so pleased to hear you are able to say that it is "water under the bridge". You really are a strong person.

Nakamova, in relation to your questions, yes the Dr's placed me on Tegretol and Keppra at the one time. There was no gradual increase of dosage. It has been that same dosage ever since I was hospitalised. My seizures stopped after that one and only day when I had 4 of them. I have not had any since. I had an EEG and MRI done whilst in hospital and everything came back normal. There is no scarring or other permanent damage to the brain. All readings were fine. The side effects that I suffer from now as a result of the medication are tiredness, vagueness, increased urination, memory loss (both short term and long term). Having said that these are a result of the medication, I am still to discover if the actual seizures contributed to the memory loss. Because this is the first time I have been unwell and the first time I have ever been in hospital, I was extremely anxious at the time. I think as a way of reassuring me, my Neuro has told me that my chances of having more seizures are no greater than the person living next door. I have since seen my Neuro only last week, for the first time since the incident, and already he has decreased my Keppra dose by a third. From 1500mg twice/day, to 1000mg twice/day. He has told me that he would like me to be seizure free for at least 12 months before considering taking me off the medication. As far as the B1 issue is concerned, no I was not found to be deficient. I have just been told that the Keppra and Tegretol can inhibit the uptake of B1, hence the supplementary tabs. I also asked the Neuro about further EEG's and MRI's and he told me it is not necessary to consider more tests at the moment because the previous tests were so good. This was obviously reassuring. Thank you also for your kind words regarding my daughter.

Flex Herns, I am so sorry to hear that your seizures can be caused by such minor luxuries such as chocolate and salt. I really wish the best for you and hope that you are not subjected to any more of these nasty incidents. In relation to my occupation, I saw the light some years ago and left the police force. I have a stress free job now. Actually, I don't allow anything to stress me any more. After seeing how bad life can actually be, the normal pressures of life seem so insignificant.

Lovemyladybug, thank you so much for your kind words. You are very kind. I look forward to chatting with you more as we all continue our journeys.

Thanks once again all. My love to all of you. :tup:

 

[Nakamova]

It can be difficult to figure out what is post-Ambien-related, what is seizure-related, and what is medication-related. One thing that can help is keeping a journal with details about how you were feeling before and after the seizures, and how you have been feeling since. Keep track of anything that strikes you as problematic or different -- memory issues, fatigue, etc. -- and note if they change when your medication doses are adjusted.

Keppra is more likely to lead to a B12 deficiency than a B1 deficiency, and B6 is often prescribed as well to help with Keppra-related mood issues. I recommend that you check with your doc about the "Bs".

Since your seizures had a definite cause (i.e., Ambien-withdrawal) and your EEG was normal, that does bode well for being seizure-free and med-free in the future. Any med tapering should be done as slowly as possible to avoid problems during the withdrawal process. (Stopping too quickly can cause seizures, similar to what happened with the Ambien). I hope all continues to go well for you from here on out.